Prime Minister breaks election promise in children’s rare diseases

Pharma News: A major election pledge to expand the National Newborn Screening Program to 80 genetic conditions is unlikely to be honoured by the federal government in the May budget.

Over 15,000 people signed a petition asking for this reform, and 84% of people polled in the lead up to the 2022 election supported the immediate national expansion of the program by 1 July 2023.

“Labor promised to fix this in 2023, but 12 months after the Prime Minister gave hope to thousands of families who had lost their children to diagnosable and treatable diseases, no child in Australia is any closer to a diagnosis and treatment at birth.

“Labor promised pompe families, gaucher families, fabry families, SCID families and dozens of other families and support groups in rare diseases they deliver a national and expanded newborn screening for 80 diseases by 1 July 2023. But they have overpromised and underdelivered, handing money over to the states without fixing the program for the babies that need it,” said Felicity McNeill Chair of Better Access Australia (BAA) said.

Australian Pompe Association President, Raymond Saich said that he was “deeply disappointed” that a year on from the Albanese Government’s election pledge to expand newborn screening to include 80 conditions – including Pompe disease – there had been little action. Instead, there is talk of further reviews due to bureaucratic red-tape.

“Prime Minister Albanese’s commitment during the election campaign to introduce world-class newborn screening was a defining moment, offering hope that we could prevent the devastating and entirely avoidable loss of life and disability caused by conditions like Pompe disease,” he said.

“However, a year on, we are still waiting for this major election pledge to be implemented. The cost of this delay is devastating for Australians impacted by any form of Pompe disease,” he said.

The Australian Pompe Association has written to the Federal Health Minister to ask when the election pledge will be implemented. It has also drawn the Health Minister’s attention to the consequences of not expanding the program, including the experiences of two families who in recent months have suffered from delayed diagnosis and life-threatening disability.

“We urge the Prime Minister to honour his commitment to expand national newborn screening in line with his election pledge. No parent should have to watch their child suffer and die from Pompe disease for want of a simple test,” he said.

Overseas, infants diagnosed with Pompe disease through newborn screening commence treatment within days or weeks of birth and are living active lives years on, in stark contrast to the infants who have lost their lives in Australia. 

“Every day that the expansion of the newborn screening program to 80 diseases is delayed is an inevitable and preventable loss of little lives or irreversible damage to a baby’s health. When a Prime Minister stands up and commits to screen babies at a world class level of 80 diseases, we should be able to believe him,” Ms McNeill said.

She added “The Prime Minister needs to stop the bureaucracy entrenching its existing disease by disease state by state philosophy by stealth and demand they honour his commitment to Australian parents and grandparents, aunts and uncles to screen all our newborns for at least 80 diseases in 2023 to give them the best start in life. Without the Prime Minister’s intervention, we will be waiting until 2050 to deliver this election commitment of 80 diseases. Without his intervention, too many little lives will be lost.”

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